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The most horrible side effect of IMURAN

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Ulcerative Colitis
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Posted 8/16/2011 5:06 PM (GMT 0)
Hi,

I have a few questions regarding the use of Azathioprine aka Imuran..

1- what is the most horrible side effect anyone has ever had by taking it

2-What is the longest period of time you'd taken it

3-For how long did it put you in remission

4-Which other drug did you take along with it

your kind answers would be highly appreciated. Thanks

Posted 8/16/2011 5:36 PM (GMT 0)
I've been taking it for about 6 weeks now--no side effects. I'm not in remission, but I never have been. No bleeding since taking it, though

I was on Humira when I started it but stopped that so currently no other drugs
Posted 8/16/2011 8:52 PM (GMT 0)
I have been on it for 10 months with no side effects at all and am in full remission for the first time since I was diagnosed. I have been in full remission for about 8 months now. I do not take anything else with it - just Imuran 150mg. I don't plan on stopping taking it unless I have to for health reasons or unless it stops working for me. I have heard of people being on it for 10 years +.

Hope that helps!
Posted 8/17/2011 12:35 AM (GMT 0)
I'm on 6mp which is similar to Imuran - Imuran breaks down to 6mp in the liver. The most horrible side effect of these meds, in my opinion is the fatigue. When I started it, I had horrible fatigue, then came headaches and slight nausea. But after my body got used to it, all that went away.

I've been on it for about 5 years now. At first it did great but unfortunately I can't metabolize it properly. I'm always at the low end of the therapeutic dose. My doc even tried adding in Allopurinol to help boost the therapeutic benefits while lowering the bad, but I found out that I'm allergic to Allopurinol. All during this time though, I have been on Colazal along with the occasional usage of steroid enemas. Longest remission while on it and Colazal alone was about a year.
Posted 8/17/2011 1:12 AM (GMT 0)
Hi -

6PM Not a good experience for me.
I tried 6MP for about 3 months.  I was tired, slight headaches and liver values were consistantly too high and then  one morning I throw-up, throw-up and throw-up with the worst headache ever.  I ended up in the ER at the local hospital where I worked and it took 3 days for my headache to go away.  I missed showing-up on my first day at a new job, not a good experience.  The MD thought that I may be allergic to it so I went off. 
However, I was showing a little sign of the beginnings of firm stools, but then I had to stop 6MP.
Still on a journey of going into remission.  Tried Remicade, Humira now on LDN after taking Nystatin for a 2 months for a possible yeast problem in my gut, changed my diet, reduced my personal stress, introduced probiotics VSL3 and now LDN with psyllium seed powder - I'm showing signs of going into remission after 8 years of a constant flare....this is a gut inbalance of bacteria....wish a scientist would just figure this out for us...

But this is a personal healing journey, maybe 6MP will work for you wink

Posted 8/17/2011 2:38 AM (GMT 0)
I've been on it over 5 years now (just upped my dose) with no side-effects. It has possibly affected my vision but I can't say for sure as a lot of people in my family need glasses anyways. I'd been doing great until recently, I think it was a sloowww long downward spiral from taking birth control and having stress, then when I started forgetting my meds sometimes, that was the last straw. But I think, had I never messed with my hormones and all that, I'd still be doing well on my old dose.
Posted 8/17/2011 2:47 AM (GMT 0)
By my third day on very low dose I thought I was dying. Extreme stomach pain and vomiting. I will never take it ever again. Horrible.
Posted 8/17/2011 2:59 AM (GMT 0)
I've been on it for only four weeks now. I have also been on 40 mg of pred, so it is hard to know what is causing what in terms of symptom reduction and side effects. I have experienced some headaches and had a couple hours of nausea for a few days. No horrible side effects that I attribute to the Imuran. (Pred side effects are another story...) I seem to be making very slow improvement, but I won't really know if it is working until I am able to get off the prednisone.
Posted 8/17/2011 4:05 AM (GMT 0)
I threw up 4 times in 6 hours after taking it... of course my blood showed low enzyme and they put me on the drug anyway.
Posted 8/17/2011 9:50 AM (GMT 0)
For me, I would never be able to take Imuran due to the risk of serious infection. The next consideration is the liver. We tend to take our livers for granted, until they start having issues that is.
Posted 8/17/2011 1:53 PM (GMT 0)
Hi Sweet Poison,

I have been taking Imuran for approx 10 weeks now. I started taking it when I was released from the hospital and at that time they had me on 50 mg per day of prednisone decreasing by 5 mg per week along with 4 g pentasa per day ( 2x 500 mg tablets 4 times per day). I just finished the prednisone and saw my GI yesterday and he said he thinks the Imuran is working for me as I have formed stools and no blood and mucous. He also changed me from pentasa to another mesalamine called "Mezavant" as you only have to take 4 tablets in the morning as they are slow release.

As far as side effects go it is hard to tell if the fatigue and joint aches I have been experiencing is from "coming down" off of the prednisone or if it is the Imuran. Guess I will know better in the coming weeks.

I also take 1000mg of calcium and a multivitam everyday.

Are you taking anything else besides the Imuran?

Hope it works for both of us tongue

Posted 8/17/2011 3:19 PM (GMT 0)
When I took it for around a year, the main side effect was chronic fatigue, but it definitely caused me a couple times to get bursitis of the elbow- not fun- and I also ended up having benign cysts pop up on my back or butt frequently. additionally, when I did get a cold or sinus infection, it would linger in my chest for months. Glad I am off the stuff, ditto with Humira.
Posted 8/17/2011 4:09 PM (GMT 0)
1- what is the most horrible side effect anyone has ever had by taking it? No side effects whatsoever

2-What is the longest period of time you'd taken it? I took it for a year and a half

3-For how long did it put you in remission? It helped put me in remission, wasn't the exact drug that put me in remission though.

4-Which other drug did you take along with it? I was taking Humira along with the Imuran.
Posted 8/17/2011 5:11 PM (GMT 0)
Imuran has given me my life back with no side effects whatsoever.
I've been on Imuran for almost 8 years now.
I'd like to get off the meds, give my body a rest , but every time I try, a flare happens.
I've come to the conclusion that the benefits far outweigh and potential risks. It's important to get blood taken regularly so the doc can see any red flags. But given all the options, to me Asocol, & imuran are not bad at all compared to surgery, remicade and the rest.
Posted 8/17/2011 6:21 PM (GMT 0)
1- what is the most horrible side effect anyone has ever had by taking it
- No Side effect whatsoever, the number of abrupt flares ended completely and put me in complete remission.

2-What is the longest period of time you'd taken it
- Have been taking it for more than 3 and half years. (2mg/kg of body weight)

3-For how long did it put you in remission
- I have been in remission ever since I started taking Imuran but this remission is a 'very fine balance'. Any slight tip off puts me in flare. To explain what I mean, I have serious issues with migraine and only thing that works as an abortive is an NSAID like Neproxen or Ibuprofen but these medications are not good for us UCers. Since I have absolutely no other option and my pain threshold for headache is super low, I take these medications when I need it BUT as soon as I take them, next day I am in flare and then on pred to control the flare. Since beginning of the year, I am on 3rd course of pred (though I don't have any side effect of pred, I am worried about long term effects)
So I will remain in remission as long as I avoid taking NSAID as headache abortive.

4-Which other drug did you take along with it.
- I take Balsalazide (Colazal) with it and other multivitamin and Vit. D with it.

Trust me, if you tolerate, its a great drug (and again, I don't know how long you can take it, since it compromises your immunity)
Posted 8/17/2011 6:34 PM (GMT 0)
1- what is the most horrible side effect anyone has ever had by taking it? no side effects

2-What is the longest period of time you'd taken it? 5 years

3-For how long did it put you in remission? 3 years and then stopped working

4-Which other drug did you take along with it? colazal
Posted 8/17/2011 7:08 PM (GMT 0)
1- what is the most horrible side effect anyone has ever had by taking it-Acute pancreatitis and elevated liver enzymes

2-What is the longest period of time you'd taken it- about one month

3-For how long did it put you in remission-It never did

4-Which other drug did you take along with it- 60mg prednisone
Posted 8/19/2011 8:15 PM (GMT 0)
1- what is the most horrible side effect anyone has ever had by taking it

Elevated liver enzymes. Now confirmed liver damage. Unable to shake off skin infections from mosquito bites, etc.

2-What is the longest period of time you'd taken it

Been on it for more than 10 years. Now on a reduced dose due to liver problems.

3-For how long did it put you in remission

Put me in a 2 year remission. Then I stopped taking it. And had a massive flare.

4-Which other drug did you take along with it

Initially - 40mg Prednisolone. Now Colazide (previously asacol) and Vedolizumab
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